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Old 10-07-2011, 08:29 PM   #1
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Confused and Sad

I am so glad I finally found a site that appears to have people who understand. I hope someone can let me know if this is common.

My mom is in a long term care facility. 6 weeks ago she was hospitalized because she was unable to eat and was not speaking. The hospital gave her fluids through an IV and she began to eat and even talk and we were singing together. the doctors say she has end stage dementia( i do not know what kind). She is 86. We returned her to the facility after they tried in the hospital for over 2 hours to put a new IV in her. my sister had stayed the night and said all my mom kept saying all night was OUCH. She said they all felt so bad for hurting her , they were all relieved we made the decision to take her out of the hospital. We did not think we should do a feeding tube or PIC. They were trying to give her potasium because her levels were critical. however the nurse said the next morning it was a good thing they did not give it to her as her levels were normal and she would have had a heart attack from the overdose levels.

My confusion is How can she be singing one day and not saying anything the next. Is this normal for dementia. She has not spoken since the day she was signing with us in the hospital. She is slowing progressing downhill. she does not smile or give any reaction. at first she would shake her head yes or no if asked if she was hungry. now she does not do that. She sleeps now almost all the time but will wake up and eat some soup and a little juice.

I want so badly to do what I can for her. My sister and I are feeding her meals every day. I cry when I let myself think about my mom and dont know what to do. How do I know what she is thinking so I can help her by talking about what she remembers. Should I be doing more? Should i insist on more medical help? We have hospice in and it is helpful when we talk but when I am alone with my mother I just feel like I am failing her.

 
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Old 10-08-2011, 03:04 AM   #2
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Re: Confused and Sad

Glad you found this site as we are all in the same boat one way or another. Please don't feel like you are failing your mother. You are doing everything you can for her. It is not your fault, it is the illness. In my experience Hospice is wonderful to have on board. My mother who will soon be 91 is under Hospice care. She has vascular dementia and has days when she sleeps all day and days when she talks all day. The contributers to this board have a world of knowledge and will be posting a responce to you soon. Try not to feel guilty about something over which you have no control. Keep posting. It helps to vent your feelings and you have come to the right place.

Aras

 
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Old 10-08-2011, 08:41 AM   #3
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Re: Confused and Sad

Hi Nola,

I am sorry that your Mom is sicker and needs hospice. Even though she was not diagnosed with dementia earlier, now it does not matter because the doctor recognized that it is end stage for dementia. Most dementia ends up with the same eposides with hospice, so don't worry about the diagnosis at this point (it helped if you had diagnosis earlier but at this point, it does not matter.)
It is hard to diagnose dementia, so don't feel guilty. It should be the doctor's calls and they could have done more tests on her memory and etc. Don't feel guilty. You are not failing her.

About the sudden stop of singing and talking, indeed it could happen this way.
My FIL has stage 7 Alzheimer's. He had used to walk with a cane for at least 3 years. suddenly in May he stopped walking and fell. Now he needs lots of help to walk even though he is not totally in the wheelchair yet. He used to talk and made comment last year. He is 90. Starting this May, he talked less and less with one or two sentences. He once even stopped talking totally because he was too tired. He eats pureed food.
Starting last year in March, my FIL no longer wants to pick up any snacks to eat. he does not know hunger anymore unless the caregivers cue him to eat in the dining room.
The thing with food is, your Mom could choke on regular food and that is why you need to feed her pureed food.
The thing is she really didn't stop suddenly although she stoppe singing like that. You probably could recall that she gradually talked less and less over the years. Eating and walking is the same way. Although it would be sudden for each change, the whole thing declines slowly over the years.

About the procedures like IVs or feeding tubes, I need to tell you this is common for all of us to disagree to feeding tubes or IVs and etc. The person with dementia hates tubings. They would pull it out not understanding why they need it. If she says it hurts, it is best not to give her IV everyday. No tubes. My FIL did have temporary urinary catheter for 2 months and now rarely once or twice every quarter. He hates catheter. But the temp. catheter prevents him from permanent catheter. In the hospital, he always pulled tubes and etc. He was combative with the nurse.

Naturally your Mom would not want to have any artificial means anymore. So feed her pureed food or yogurt and things like that is a good idea.
No feeding tube because first of all, it is the permanent tubes that she would hate. Second, it would cause more infections due to the wound/opening. Third, she may not survive more than a month after that, so why bother to make her suffer? The residential home where my FIL is doesn't offer feeding tubes due to the reasons above. (Of course it is up to the family to move out to get the tubes. I think Catholic homes want feeding tubes...)

Please listen to the hospice people for help. They will be able to tell you what to do.
It must be heartbreaking. I know. When I saw that my FIL stopped talking completely for one afternoon, I was feeling sad and realized that is to come next year probably. He is not in hospice yet.

One thing I know for sure is, your Mom is still the same person. Use your common sense. What did she do before? What did she like? Try it. My FIL does not talk much either but I know he wants to work and likes to have girlfriends. I know what his eating habit is... So go from there and trust that you know her better than other people.

Please don't feel so bad and it is not your fault. The diagnosis issue is more likely the medical professionals' probelms as they should have noticed earlier.
Now just make sure your Mom has comfort care and that she does not suffer more.

Take care,
Nina

Last edited by mod85; 10-08-2011 at 07:17 PM.

 
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Old 10-08-2011, 10:18 AM   #4
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Re: Confused and Sad

Hi Nola Welcome to our group. I am so very sorry for what you're going through. Hang in there - you are doing a good job. It's so very difficult. Keep us posted as to how you're doing - {{{hugs}}}

 
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Old 10-08-2011, 02:21 PM   #5
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Re: Confused and Sad

this disease is so hard to understand. there is no rhyme or reason. hospice is wonderful. just try to take it one day at a time. take deep breaths and remember to take care of yourself. most important. keep venting

 
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Old 10-08-2011, 07:09 PM   #6
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Re: Confused and Sad

Ah..Nola...no, you are not failing your mother. You are loving her. You are helping her the best you can to see her through this horrid disease. She is blessed to have two daughters who care for her and sit with her and feed her and yes, cry for her.

You, indeed, have found the right place. We do know what you are going through because we have all done it ourselves!

My mom recently died on July 29th after several years of suffering it.. It is a blessing she is gone and free of it all. Do I miss her. Oh yes. But I wouldn't bring her back. Not for one minute!! You have to love them enough to let them go.

My mom was in the hospital 3 or 4 times and the IV was a nightmare! She didn';t understand it and wanted it out...she pulled and tugged at it and we did everything we could to keep her hands off of it. We wrapped it several different ways but she would get to it anyway. It was awful for her. She was hospitalized the last time about a year ago and after that time I said, no more!! It is so upsetting for them to be in a place they are unfamiliar with.. I took her back to her facility and called in Hospice because I knew they would keep her out of the hospital. And they did. She never went again!!
We as a family came to the decision that the best thing for her was to let her go. If she needed any kind of treatment..be it for pneumonia or mini stroke or well, anything, we were going to refuse it. I mean., what were we trying to save her for? So she could live longer and have no idea as to what was happening to her?

From last October, when she was last in the hospital, to February she did well..then we took her off the one dementia drug she was on and she went quickly down hill. She stopped walking, so she spent her last months in a wheel chair. She stopped speaking all but a few words then lasted another 5 months. Her last several months ..with the help of a cocktail of drugs to calm her fears and help her angst...were ones of sweetness. She was gotten up and dressed by her caretakers daily and I would take her out for walks. We would walk (her in her wheelchair) and I would sing to her. She experienced the simple joys of the sun on her face and a breeze though her hair.

Like you with your mom, I sat with her and fed her and fixed her hair and put lipstick on her and pampered her the best I could. She could no longer feed herself or walk or talk...but she could smile. And smile she did...every day the rest of her life. It was that smile that I looked forward to. You have to find the little things that bring joy to you...the moments of joy. Such as the ability to hold her hand or rub cream on her feet. I would sit with mom and sing to her..all the songs of her era. I would sit with her and tell her how wonderful she was as a mother to me and my brother. And how blessed we all were to have her as ours.

You will have plenty of time to cry for her after she is gone..don't waste the time you have now to enjoy her.

As to her singing one day and not the next...someone explained it to me as an on and off switch in the brain. Sometimes the light bulb was on and sometimes it was switched off. Don't sit and wait for it to come on again. If it does it does...but in the meantime...enjoy her. This disease is what it is and we can't change it...so we learn to roll with it.

I may sound calm and all knowing...but believe me when I say I feel I have been to hell and back. I understand your grief and heartache.

Think of these last days with her, no matter how long they last, as a gift. Time to share all you can with her.

Keep in touch.
Love, Meg

 
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Old 10-09-2011, 10:24 PM   #7
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Re: Confused and Sad

Nola,

The other thing I would like to mention is about the sudden diagnosis of end stage dementia. The other possibility of having dementia suddenly may be due to some surgery's anesthesia result or head injury and etc.
I don't know if your Mom had any trauma right before this, so this is one factor.
If it is the chronic dementia that the doctor didn't diagnose earlier, it may be because there are some GPs out there thinking dementia and aging makes no difference. But dementia is a disease and it is not aging although older people tend to get dementia (not everyone does.) There are tools today to diagnose it and there are many ways to cope with it by dementia drugs or caregiving.

Like what Megan said, spend time with your Mom now and this is your precious time with her. If she does not sing, you can sing for her. She still knows familiar things so try to bring that up. If she does not know your photos, it is ok, just be there because she is used to you and your sister.

Hugs,
Nina

 
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Old 10-09-2011, 11:13 PM   #8
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Re: Confused and Sad

Nola, I am so sorry you needed to be here but glad you found us. I echo what the others have said.... You are doing all you can for your Mom and in no way failing her. This is one disease we can't "fix".

I have been this route with my Dad who died March of 2010 from Vascular Dementia and my Mom who is in the early late stages of Alzheimer's. I can tell you that each is different. Mom lost her ability to communicate over 2 years ago. Yet she can sing. Singing is very different from communicating. Even when they do not comprehend what they hear or respond... they can sing. Singing comes from a different part of the brain. I worked for many years in long term care and I have seen residents sing like a bird who have not spoken words in years. So turn up the CD player with one of her favorite songs, start singing, and see if you can get her to sing with you. That is the very reason Music Therapy is so amazing

With your Mom in the final stages of dementia, I agree with your decisions to call Hospice and remove her back to her "home". Home is somewhere she is comfortable and familiar with. I did this with Dad, and I now have Hospice involved in Mom's care as well. Dad ripped out IV's as well. I repeatedly refused to let them replace them. Mom will not have any IV. They do not understand and it is only temporarily beneficial at best. I do have medical directives from my parents that they did not want NG/feeding tubes or other extraordinary measures such as pic lines. That made my decision easy. I will honor their wishes. Nothing the medical profession can do will make this disease go away so why torment them with procedures. Sometimes we have to love them enough to let them go.

I agree totally with Meg. There will be enough time when they are gone to grieve so please try to enjoy your Mom while she is with you. Sing with her, sit and hold her hand, feed her, give her hugs, or just enjoy being with her. You have done and are doing what is necessary.

Check with your Hospice Social Worker and see if there is a knowledgeable volunteer that can just sit and talk with you... or sit with your Mom and give you a break. Talk to the social worker. They understand what you are going through and can give you specifics related to your Mom and answer your questions. Dad had and Mom has an amazing Hospice team. The nurse was/is great but it is the Social Worker that has given me the most support. And keep typing here We are all walking along the same path and together we will get through....

Love, deb

 
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Old 10-21-2011, 08:17 PM   #9
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Re: Confused and Sad

Thank you so much to all that replied. It was truly appreciated to know others understand. My mom is still hanging in there. she was looking uncomfortable and she had a urinary tract infection. We decided to give her an antibiotic becasue she seemed like she wasa in pain and very uncomfortable. Dont think all the professionals agreed but we just want her to be comfortable. After giving it to her she has seemed to respond more with a slight petting of a kitten or holding a hand. Nothing more than that but at least she does not look uncomfortable.

We know that once this one clears up she will get another one. Do we keep giving her the antibiotics or not. I dont know.

She is eating less and sleeping more but her vitals are still good. I dont know how long she can last eating so little. Maybe a yogurt a meal and a small glass of juice. Now she cannot even handle eating applesauce and mashed potatoes which she was eating last month.

What do we do when she cannot even eat yogurt and maybe some soup broth. Do we treat another infection. Do we just give her pain meds and not an antibiotic. Just seems like how can we do that.

Any thoughts would be appreciated.

Again thanks so much. this board has been a real help. THANKS

 
Old 10-21-2011, 10:32 PM   #10
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Re: Confused and Sad

Those are decisions that each of us have to make for ourselves... or as a family unit. We can only tell you what we have done, or plan to do, and why. Then you can take all of what you read and make the decisions that are right for you.

As for antibiotics, it depends. If it is a simple UTI that can be cleared up with a short run of minimal antibiotics then I would probably do that. If it is something more complicated that may or may not clear up I would probably say no. I would, and did with Dad, use the necessary pain medication to make him comfortable. As for the food and drink, I let Dad determine what he ate. I offered and if he ate it ok, if not, then that was ok. I did the same with liquids. I did offer liquids first. Hydration is more important than food. You can live for weeks without food but only a few days without hydration. Amazingly it doesn't take much. When Dad could no longer eat or drink, I let him go in peace. We only gave him pain medications at that point. He didn't need much pain medication and had none the last day. He left peacefully in his sleep.

We are programed to "fix" things. We want to fix what is wrong. We want to feed and hydrate, and treat, and make it all better. There is a point, in my opinion, that we need to accept that we are not able to make it all better and let go.

As for "what the professional want"... they are giving you suggestions and their opinions. The final decisions are yours. Listen, understand their position, and then make your own decision that suit you with no regrets

This is not an easy journey but one we must all take. Please don't worry too much about the process. Just be with your Mom, love her, tell her what is in your heart, and enjoy her presence while she is with you

Love, deb

 
Old 10-22-2011, 12:37 PM   #11
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Re: Confused and Sad

I agreed with everyone that you need not to tell the bad news. Don't tell her the exact truth. What Deb did/does is quite good. It is clever.

My late MIL died when my FIL was still in early moderate stage so he knew it.
However as time goes, he forgot the details about how she died and etc. He knows that she died but he has moved on by looking for girlfriends. Now he still likes to play with female caregivers for attention. He is in stage 7 in the NH now. We hire someone from the home to be with him 4 hours per week. He loves the attention.

The elders like your Mom and Deb's Mom are in a different situation. The spouses died when they forgot a lot already. So don't bother to tell her the bad news.

At times my FIL did ask for his late wife but we told him the truth while he was in moderate stage. He felt sad a little bit and once he asked to resurrect her!!
The difference is he has moved on with ladies so he does not really feel so bad now. Of course we don't mention her with him anymore although there are her photos on the wall.

Hugs,
Nina

Last edited by ninamarc; 10-22-2011 at 12:39 PM.

 
Old 10-22-2011, 02:01 PM   #12
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Re: Confused and Sad

Like Deb said...we all have to make the decision for our loved one. Our decision was to let my mom go when necessary. No life saving measures. But we did treat her for simple UTI's. Those made it uncomfortable for her. But we didn't agree to tests that would include anything more than a simple urine test. As she progressed, I too thought if we would someday just stop the treatments for UTI's but blessedly she had supper one night and then had difficulties breathing and was gone by morning with Hospice by her side...and us, of course.

It is a difficult time for you...just be there for her. Love her. Talk to her. Sing to her. Enjoy her.

Love, Meg

 
Old 11-04-2011, 04:25 AM   #13
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Re: Confused and Sad

Nola

There's not a lot I can add to what has already been written. Just please don't beat yourself up about any of this. You are doing the best you can.

You have found a great support group here. K

 
Old 11-04-2011, 05:17 PM   #14
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Re: Confused and Sad

we are here for you. its the disease that talks and nothing else. hugs

 
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